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CLL Support Association
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Can you afford to ignore me?

If you know what PSA blood test is and if you or your male partner has had a recent blood and physical test, you can probably leave this question now. If you are still here I want to share my story in the hope that I might help someone in this forum to live a little longer than may otherwise be the case.

We all have CLL or care for someone with the condition. Cancer is a word we have learned to face, not fear. Like many here I watch and wait, I am in my fourth year of doing so.

My partner has suffered for over 18 months with frequent periods of extreme pain which his doctor diagnosed as Nerve Root Sciatica. I won’t bore you with why it took so long to get him x-rayed, but when it was finally taken the x-ray showed sclerotic bones in his hips. Six weeks on from his x-ray he is already in treatment for advanced prostate cancer. It has spread to hip, sternum, rib and possibly elbow, and invaded his back passage.

There were absolutely no symptoms that there may be a problem with his prostate. No getting up in the night to urinate, no symptoms that might have flagged something was wrong. Prostate Cancer frequently has no symptoms, until, as in my partner it has infiltrated and weakened the bones causing the pain.

A simple blood test for PSA (Prostate-specific antigen) takes 2 minutes, but could give you years more life. We are prone to secondary cancers, so please don’t take a chance. I promise you, watch and wait is a walk in the park compared to advanced prostate cancer. The following link will tell you more.

Please don’t let my sharing of our situation be for nothing. Have the test. I wish I had known.

18 Replies

Thank you Bubnjay... this is so important

I would like to add a second situation, that CLL/SLL patients need to be mindful of...

CLL infiltration of the prostate...

CLL/SLL is the most common type of leukemia/lymphoma to involve the prostate in routine specimens, and it is usually seen in association with involvement at different sites, particularly the pelvic lymph nodes.

As a high risk patient with both CLL and diffuse large B cell lymphoma, I have PSA/DRE and testicular examinations every 6 months... often followed up with a pelvic CTscan

'Taken as a group, primary and secondary prostatic leukemia/lymphoma most commonly presents in the seventh decade. Primary prostatic lymphomas, which tend to be high grade per the largest series, usually present with symptoms of a large prostatic mass, including obstructive symptoms (eg, hesitancy, urgency) and hematuria. Digital rectal examination (DRE) findings usually are abnormal, showing a diffusely enlarged or nodular prostate in the majority of cases. Serum prostate-specific antigen (PSA) usually is not elevated (mean 3.5 ng/mL).

Secondary prostatic leukemia/lymphoma is often discovered incidental to a diagnosis of prostatic adenocarcinoma. Symptoms at presentation may thus be intermixed with those of prostate cancer and include elevated serum PSA (mean PSA 10.3 ng/mL).Secondary prostatic leukemia/lymphoma may also present with obstructive symptoms.


Forewarned is forearmed....

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I had a psa test about 8 weeks ago returning a score of 2.7 (previously 1.9) However, given that the psa is not conclusive, I feel that a DRE may be more so. Time for a visit to my GP, I think.


Mikey, your PSA not really high but your awareness and seeking further advice is a a sensible step.

Hope all is well and you are reassured.



Prostate and Ibrutinib:

Prior to treatment I had the symptoms of BPH, "Benign prostatic hypertrophy",(eg, hesitancy, urgency), necessitating médicine.

These symptoms have completely disappeared in the first weeks of Ibrutinib.



Benign sounds good to me and so pleased for you that symptoms have disappeared. Do you remember what your PSA count was. Just wondering what normal is, and whether it is higher for CLLers?

Continued success with ibrutinib



Certainly if you have symptoms or your PSA level goes above 4 then action needs to be taken. Delay costs lives. Bear in mind alcohol and any sexual activity in the days prior to the test may raise the levels so not the perfect test just an indicator. If there prostrate cancer in the family then even more vigilance is advisable.

Cll is just anothe factor on top


From Prostatecanceruk.org psa test results according to age:

up to 3 ng/ml for men in their 50s

up to 4 ng/ml for men in their 60s

up to 5 ng/ml for men in their 70s and over



Interesting subject having lost two at fifty eight from it (ten years ago) since when I have been having annual tests. A year ago my level was0.9 but unlike Yves 747 having been been on Ibrutinib for eight months my symptoms which I have had since 1987 have just got progressively worse. I would be interested to know yves what medication you took to relieve your symptoms and whether or not you are taking it with the knowledge of your trial team. I I have tried zinc and Saw Palmetto but with little success. Perhaps I need another test as things can suddenly changed and I have not had a test since starting treatment.


I've been following this with interest. I am aged 70 and my PSA level is 5.7. I have the test about every 6 months ( every alternate blood test ) and it's been fairly stable for the last two tests. DRE should enlarge prostate but fairly soft. Neither my doctor or consultant are too keen on a biopsy at the moment in view of possible side effects - seems like another watch and wait !



That's good news, be happy to watch and wait . To help you feel more positive about your PSA, I can share that my partner's count was 320 at diagnosis, and we are overjoyed that after 5 weeks hormone treatment it has dropped to 16.7. He is 71. Long may you watch and wait. Sadly we cannot wipe out the damage already caused, just hope one person who thinks all is fine reads this post and decides to get checked out.

Best wishes




I want to thank you again, for posting this. It can't have been easy, with all the things your partner is going through, with his advanced prostate cancer. As you know, it was because of you, that I was able to persuade my own hubby to get checked out.

We wish your partner (and you) all the best, as he goes through difficult treatments and you face the future together.

With heartfelt thanks,

Paula (and hubby)


Bub, how is your partner managing with his prostate cancer treatment 8 months on?

This "The Conversation" article describes the draft guidelines on prostate testing just released by two peak Australian cancer groups and I'm not really encouraged by the recommendations: theconversation.com/draft-g...

It must be of concern that doctors nowadays may not have much experience with Digital Rectal Examinations. The difficulty in establishing what course the cancer is likely to follow from a PSA result and later a biopsy, obviously makes providing optimum treatment recommendations fraught with danger for this common male cancer. There are considerable parallels with CLL too, in that those diagnosed can be monitored via "watch and wait" and that the trend of PSA results is more instructive than just one PSA measurement. Seems to me that this is another cancer where greater patient education can provide great dividends for those affected.



Hi Neil

interesting article and the comments that follow it. I think that one of the main problems is whether men want to know or bury their heads in the sand concerning this very unpleasant cancer. There does seem to be a misconception that one would have symptoms if there was anything wrong and this is not the case.

My partner's doctor was treating him for sciatica and three times refused to send him for an xray. When he eventually had one on the advice of a physiotherapist it was too late, his bones were already showing the effects. Seems sometimes that this disease presents as sciatica, and is ignored.

To answer your question we are dealing with the effects of radiotherapy, and the hormone treatment to remove testosterone, which has caused him many really unpleasant side effects and hot flushes that to date seem unending. We just sigh with relief when the PSA blood tests show continued reduction. If you have a blood test and a raised PSA reading, unless it is already out of control and needing urgent treatment, you can discuss your options with the specialist to decide how you want to proceed.

The problem with the advanced stage of prostate cancer is that the treatment does not work for ever, median period being around 2 years. Certainly prognosis is better when found before the cancer metastises.

I still say better safe than sorry, have the PSA simple blood test, but I know ostrich syndrome is alive and well. Better to watch and wait while being monitored than the alternative.

Best wishes



Thanks Bub, for your update. It can't be easy with both of you wondering what your futures hold with two unpredictable cancers. I hope that you both beat the odds and that new treatments will be available if needed.



Warnings borne out of personal experience are so valuable Bub and I thank you for raising this important issue. It's well documented that men are more reluctant to pursue these matters and it infuriates me when GP's claim to have X-Ray eyes and issue false reassurance based on that. Especially when the PSA test is inexpensive and easily conducted as an initial investigation. As a result I'm urging my husband to be checked. So many of us have sciatica and accept it at face value.

I've always asserted that the only thing worse than having cancer would be my husband or offspring to have it. I'd have much more fear and sense of powerlessness so I really empathise with the emotions around this. And it goes without saying that my best wishes are with your husband Bub and you too in the joint roles you share as both patients and supporters to each other.

Sometimes we forget that carers can also be the patient and that strain is immeasurable (as I know to my cost at times).

The additional possible prostate cancer infiltration experienced by CLL'ers is also another important warning to heed.

Well done to you for raising this important but intensely personally painful message Bub.

Sending very best wishes,

Newdawn x

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Thank you for your concern and best wishes

If just one person who reads this is tested and saved from the trauma of metastatic prostate cancer, then it has been worthwhile even if we never know.



A very salient post, I've been having one for a number of years, because I've had some of the symptoms for even longer, so far it's always been OK, but I'll be insisting on being tested again next year, just to keep checking in the same way they're monitoring my CLL.

Prostrate is a silent killer, because quite often by the time you realise you've got it it's too late as it was for a good friend of mine. He collapsed on the last day of his holiday in Jan 2012, when he finally got home he was tested and found to have it, but as you say in you're thread it had spread and he died in the March of the same year, so I'd endorse the suggestion that any male with CLL that hasn't a PSA check should do so the next time their bloods are checked.

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I am prostate cancer sensitive. Not only do I have a Lymphoma that damages my ability to resist secodnary cancers but also a family history of close relatives with fast moving Prostate Cancers. I do have PSA tests but it is not a reliable indicator.

'How accurate is the PSA test?

About 15 out of every 100 men with a normal PSA level have prostate cancer.

About 75 out of every 100 men with a raised PSA level don't have prostate cancer.



It may reassure you if the test result is normal.

It can find early signs of cancer, meaning you can get treated early.

PSA testing may reduce your risk of dying if you do have cancer.


It can miss cancer and provide false reassurance.

It may lead to unnecessary worry and medical tests when there's no cancer.

It can't tell the difference between slow-growing and fast-growing cancers.

It may make you worry by finding a slow-growing cancer that may never cause any problems.' nhs.uk/conditions/prostate-...

So if you have a PSA test the results need careful interpretation. In at least one survey there was no overall benefit. The damage done through biopsy balanced those saved through early action. There is a risk of it f doing more harm than good. Here is hoping they make some rapiod advnaces in PC diagnosis soon.


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